Diabetes Blog Week Day 5: Tips and Tricks

Let's round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There's always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.) 

For some reason I thought I'd written a post about this before, but apparently not! 

By nature, I can be a bit disorganised, lazy and forgetful. so most of my tips revolve around helping me be organised without really having to think about it and making life a bit easier! In no particular order they are:

• I love these little bags of jelly beans for on-the-go hypo treatments. They're 10g carb each, they don't take up much space and they're individually packed so you can shove them in a bag/pocket whatever and they stay non-sticky and non-squished!

• I also love tiny boxes such as these really useful boxes for robust, sturdy hypo storage.

• I'm also a fan of having hypo stashes all over the house - next to my bed, in the kitchen, next to the couch - with a variety of treatments (little cans of coke, glucotabs, jelly beans or babies) so that I don't have to go far and have a variety options depending on the hypo.

• I also carry syringes with me rather than pens in case of pump issues - they take up considerably less space, I don't have to worry about insulin in the pen cartridge going off and it's more convenient.

• I also have a diabetes emergency stash at work, with everything I might need/break/run out of - I have spare sets, cartridges, hypo treatment, batteries, meter, strips, plasters and opsite - since it's the place I spend most time apart from home. I'm working on having a similar thing in the car.

• I like to have little "on-the-go" bags in my diabetes drawers (where all my stuff is kept) that I can just pick up and stick in whatever bag I'm using. They're just little food storage bags that have a couple of spare sets, some hypo treatments and a syringe. I also have larger ones that have a bit more that I can put in my bag for weekends away so I don't have to think too much about it.

• For help with carb counting we have some of these blackboard stickers on our fridge. One has a small table on it permanently with columns for "food," "weight" and "carbs" and then space at the bottom for total and per portion. This means I can just weigh things and stick the info up and then work out the carb while things are cooking. I also keep a calculator next to the scales, and a list of commonly made meals with carb counts.

• And finally, I have today randomly found out the Bayer contour test trip holders fit 5 fruit pastilles and fit easily into my pocket!

(Also, I swear, I'm not working for Amazon!)

Diabetes Blog Week Day 4: The Healthcare Experience

Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What's your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

So today's topic is on healthcare experiences. I wasn't really sure if I had anything to write about this, because I don't really know the answer to these questions, but to be honest, I think that *is* my frustration.

I'll be honest, I don't really feel that I get anything out of my normal clinic visits.  I get my HbA1c done, and sometimes other tests as well if it's an annual review. I get my feet tickled and my eyes checked, and things like that, and I know that these are important, which is why I go.

But I don't feel that I really get anything else.  I do my own reviews, and my own tweaks and experiments and changes, and I don't really feel I need any help with that - and I'm not expecting a HCP who's only looking at recent data to be able to give me any long term solutions as diabetes is, at it's heart, an ever-changing beast.  And the thing is, I don't *want* help with that - at the end of the day, it's my diabetes and I'm the one living with it. The one consultant I did see who was much more hands on drove me up the wall as he was very critical and would make huge changes based on a couple of days results, which very much tells me that I don't want that kind of relationship.

And 'm not saying I don't get *any* help - I've been through DAFNE training, I've moved onto a pump, and I'm using CGM (though self funding, because bringing up the possibility of funding got me a big fat no...) so they're there for the big things, and the medium things, like the checks.  But it's the little things that I feel I'm missing, and I don't even really know how.  I read about other people who have a great relationship with their diabetes team, and how they have these amazing appointments where they go in with a list of things and it's all very productive, and I'm just sitting there like "How?!" I don't feel like I can do that, because I generally don't have a list, and I feel like I just turn up, get test results, and have a quick chat and then go. 

I guess maybe I just feel that I'd like a better ongoing relationship, and I think a large part of that is that, at my clinic, it's a bit of a crapshoot who you see, so I usually see a different person every time and I get that it's not possible to make sure that you see the same person every time, but at the liver clinic I go to, which is ridiculously busy, I see one of two doctors, and so over the past five years there's a working relationship and trust that has built up.  I guess maybe it's just that I'm looking for, and maybe productive stuff would build out of that, but at the moment I'm not getting it.  I'm looking forward to reading other responses to this topic to see how other people feel about it!

Diabetes Blog Week 2016: Language and Diabetes

There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I'm willing to bet we've all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don't care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let's explore the power of words, but please remember to keep things respectful.

This is an interesting one for me, because I feel different ways about different words, so I'm going to take them into three batches:

The Good: Diabetic vs person with diabetes

This is something that I really don't care about, personally. I've been diabetic/had diabetes since I was four, I've grown up with it and it's part of me. I will refer to myself as a diabetic and I don't really feel anything negative or pejorative related to that. I don't feel that I'm being defined by it, it's just a descriptive term, in the same way that I'm short, Glaswegian, geeky or a scientist. To me, it's just another one of the many things I am.  I also lazy, and diabetic is just faster. ;)  However, I understand that not everyone feels this way, and it's something that people can feel quite strongly about, so I try to use PWD or person with diabetes whenever I'm referring to someone else and try my best o be respectful of others feeling on the matter.

The Bad: Checking vs testing

This is something that I feel relatively strongly about with regards to how *I* use the words, mainly because I think it does change how I see and react to blood glucose levels.  In the same way, I also try very hard to look at the numbers as data, and remove the words "good" or "bad" in relation to what I see on my meter - it's information that's helping me decide what to do next.  I spent a long time as a child and teenager getting beaten up emotionally by "bad" numbers on a machine, and I've said before how I think it led to a form of burnout or apathy towards my diabetes care, and I'm trying very hard to change that. Notice I said try ;) I'm better at it that I used to be, but it's still a hard mindset to get out of.


And the Ugly: Compliance

Now this, this is a word I feel strongly about, and I know I'm not the only one. I hate this word, I think it's a bullshit word used by lazy HCPs to dismiss patients who are either not meeting the targets set or not doing things the way the HCP thinks they should.  I think it's very easy to just label a patient as "non-compliant" without really going any further or asking the questions that should be asked - mainly why is the patient not meeting targets? Is there something else going on? Are the targets something set by the HCP in discussion with the patient?  (and if not, why not?) Does the patient need extra help or education? And a million other things that should be asked.  I went to so  many clinics as a teenager to be told "your HbA1c is too high, get it lower!) and made to feel like a failure, without anyone ever, ever suggesting anything to help.  Additionally, just because a patient is doing things differently doesn't mean it's wrong - maybe you could learn something from them! I've learned a lot from the DOC in terms of different ways of dealing with situations like exercise, spikes after meals etc, and I'm not afraid to try new things - if they fail, fair enough, tweak and try again, ore try something else - but I've heard of people who get labelled as "non-compliant"  because they don't just follow the textbook that their doctor is using.   It's a horrible, judgemental word, and I hope it gets drummed out of use.

Diabetes Blog week 2016 Day 2: The Other Half of Diabetes

We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)

I was going to talk about burnout for this, since it's something I'm struggling with a little at the moment, but then I realised I don't really know what to say, and I think lots of people have posted about this, so I thought I'd talk about something a little different, and since the topic is the other half of diabetes, I thought I'd talk about *my* other half and his relationship with me and my diabetes.

So, my husband has a fairly severe phobia of needles, which he's had for a long time. And I'm not talking about the "oh I don't really like needles" (I mean, who does?) type of thing, but the passes out when having vaccinations, gets really queasy even thinking about them kind of phobia. So you can imagine that it's not easy then having to face that phobia on a daily basis.

He has a couple of other friends with diabetes, who had just moved away shortly before he met me. Now, we met online, and there was nothing in my profile about being diabetic, and it never really came up, until one day we were chatting online (before we'd actually met) and I mentioned something about blood sugars.  At which point, I realised I hadn't actually said anything about being diabetic at roughly the same time that he came to the realisation that I was.  And then he tells me about the needle phobia thing, and I wondered if that was going to be the end of things there and then. But we talked about it and he said that he had ways of dealing with it that he'd worked out with his friends, that mainly involved warning him any time I was going to be doing anything with a needle.

We've been together for seven years now, and there have been many diabetes related things for us to deal with. I was on MDI when we started dating, but have since moved onto a pump. I've started using CGM, and I had two seizures due to low blood sugar (one of which happened in our flat). I've had laser for retinopathy (that was fun. Not.) He's considerably less freaked out by my needles now, and he's had to learn all the "wonderful" aspects of living iwth diabetes that you just don't really *get* unless you're doing it, and it's been a learning process for both of us - I've posted before about how I'm usually quite private about my day to day diabetes care, and it's taken a while to be able to share that with him. He's learning when to offer help and when to just offer sympathy, when to let me vent and when to step in on my behalf. He knows where all the hypo stashes are, and how frustrating some diabetes professionals can be.  He's been to a diabetes conference, and is going to another one in June. I think it's opened his eyes to a whole other "normal", and he's I've learned that I don't have to do this alone. I can't imagine it's easy watching a loved one dealing with the ups and downs of diabetes, particularly those times when there's nothing you can do, and I'm always grateful that he's willing to go through this journey with me, both of us learning as we go.

Diabetes Blog Week 2016 Day 1: Message Monday

Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? 

I don't think I have a particular message or theme that I try to get across in my blog, other than "you are not alone", which I think is common across a lot of diabetes blogs.  I've been part of the DOC for a long time now, starting on forums and gradually moving over to Twitter and Facebook, and blogs happened somewhere along the way.

For me, blogs continued the whole "wow, you too?!" thing that had begun in forums, and I loved being able to read about someone's story, particularly if we were going through similar things.  When I started, there really weren't that many blogs around, and most of the ones that were around were from the US. I thought that maybe I could offer a slightly different perspective coming from the UK, and I've been blogging on and off in one way or another ever since.

I keep coming back to the idea that I'm blogging to send a message, and I guess in some ways I must feel I have something to share, otherwise it would be a private blog, but I don't feel that I blog because I want to stand up and shout about something that's particularly important, it's more like I'm sat in a quiet corner in a bar telling stories about my experience. Hopefully some of those experiences will strike a chord with some people, and they may find something that helps them, even if it's just that other people have crappy days, and horrible clinic appointments, and also take joy in small things that no-one else gets if they don't live with diabetes.  I think I probably blog partly for myself, because there's something therapeutic about writing things down, and partly in the hope that I can maybe help someone else.

Diabetes Blog Week Day 3: What Brings Me Down

May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks go out to Scott of Strangely Diabetic for coordinating this topic.)


Diabetes sucks.  We all know that, and I think most of us just sort of deal with it and keep going, because, well, there's not really much we can do about it.  We come up with ways to make it suck less, and that's for tomorrow's post, but there's also things that make it suck more, and I'm going to write about one of those today.

One of the things that brings me down is unhelpful doctors/nurses and other health care professionals.  I'm not talking about regular HCPs, the people who don't really have anything to do with diabetes.  While it is frustrating as hell when they ask stupid questions and downright terrifying at times if these people are responsible for your care, those aren't the ones I'm thinking about are the ones who are actually meant to be helping us - our DSNs and endocrinologists.

I've swapped endos recently, due to various factors and the way my clinic works.  The first time I met with my new one he seemed lovely - very enthusiastic and keen to help.  The two appointments I've had since? Not so much - in fact I cried after both of them, and I haven't done that in a while. 

I'm not really sure I can pinpoint exactly what was so horrible about the appointments, but in both of them I felt so utterly incompetent as a diabetic.  The first was rushed - he was running about two hours late, and was clearly trying to catch up, and I had a very hurried appointment which pretty much consisted of him telling me off, both for not contacting the DSNs for help (which I didn't feel I needed) and for not making changes as quickly as he thought I should.  The second was a longer version of the first, even though I pointed out that I had tried to contact the DSNs on several occasions and received no response, and a thorough going over of the previous two days of CGM data and wanting to make several changes based on that - oh and a criticism for being 7.3 (131)  an hour after a meal...

Oh, and my HbA1c? Is 6%

I walked out of those appointments, and like I said, I cried.  I just sat there and thought "what's the point?"  If I get criticised and told that I'm not doing well enough even though I work my arse off to get those results, then why bother?  I might as well just give up and not worry and get told off just the same.  If I get treated the same way with an Hb1c of 6 and one of 10%, then why the hell should I care? (Don't worry, I'm not giving up, I'm just explaining how I felt).  I sat there and I felt all those familiar thoughts come back that I had when I was a teenager and I just...gave up.  If it wasn't for the fact that I'm a bit older and wiser now, and a bit more stubborn in terms of not letting that bastard get me down, I could see appointments like those sending me on a fast track to burn out. 

Because if the people who are supposed to be helping and supporting you through the sucky condition just grind you down, then what chance do we have?  It wasn't even so much what he said, I didn't mind him suggesting changes, it was the way he did it.  The whole attitude that I was clearly doing things wrong, and every number out of range was explicitly my fault.  Who does that kind attitude help? 

Luckily, I have other support systems in place (which is tomorrow's post), but I worry about the people who don't, the ones who go into that office and come out feeling like I did and actually do give up.  Because it's hard to live with this disease and deal with all the crap that comes with it without fighting against the people who are meant to help as well.  It's just one of several things that brings me down about diabetes, but the thing that gets me the most is that it shouldn't be - your diabetes team should be one of the things that tries to make diabetes suck less, not more.

Diabetes blog week day 2: dream diabetes device

Today's topic is meant to be writing a poem, but I really suck at that, so I'm going to go for one of the wildcards.

I was initially going to do the short story (I'm sure Garrus* my pump has more than a few tales to tell...) but I decided to go for the dream diabetes device one instead, since I've had these thoughts knocking about in my head for a little while.

The prompt is this:

This continues to be one of the most popular DBlogWeek topics, so let’s have another crack at it! Tell us what your fantasy diabetes device would be? Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, or anything else you can think of. The sky is the limit – what would you love to see? 

I wrote about this before a couple of years ago, when I said that I wanted a magic carb counting device (which I still totally want).  This time I'm dreaming of something different. You know what I want? I want some kickass software to connect all of my diabetes paraphernalia.
I want an app on my phone that will talk to my pump, to my cgm, to my glucose meter. One that I can easily add notes to, and search on the go.  I want to be able to pull up when I last had pizza, see what my blood sugar was before, how I bolused, and what the cgm trace looked like afterwards to help me decide what to do this time. I want to be able to look at the data on a computer,  and combine ir however I want to spot trends, and send it to my clinic. I want to be able to pull out my phone and check my cgm, or bolus without needing to pull out my pump.

That's what I want. I know there are apps and programs out there that do parts of this,  but I've never found anything that does everything I want (and I'm a demanding little bugger). 

So that's my dream diabetes device. What's yours?

* My pump is called Garrus for very geeky reasons relating to the fact that he's blue and calibrates my CGM... ;)

Diabetes Blog Week Day 1: Change the World

Today's prompt: Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you.

I've been pondering this topic for a few days, because there are plenty of diabetes-related issues that I am pretty passionate about, and have ranted extensively about - a small sampling includes, but is not limited to: diabetes myths (no, I didn't have too much sugar as a child, yes I can eat that...); pump access (while I don't believe everyone will get on with a pump, I believe everyone should be given the option); CGM access (ditto); and the word "compliance" (grrrrr...).  I don't really formally advocate for anything, but I was trying to think of something that I, personally, feel is important, and what it came down to is this:

Education.

I think that education is one of the most important things that a person with diabetes needs in order to best manage it  - we have a condition that requires daily decision making in order to prevent it from kicking us in the ass (and despite our best efforts sometimes it does that anyway!)  How can you make the best decisions if you're not informed?  I really feel that everyone who has diabetes, or cares for someone with diabetes should have access to an education course at diagnosis, and that information should be updated as necessary.

I think that everyone should be taught carb counting, and how to adjust their insulin if necessary.  I think that everyone should be taught how different factors can affect your blood glucose levels - alcohol, exercise, hormones, stress etc.  How these can make your blood sugars go up or down, and how to help manage the changes.  What to do if you're sick, or if you're hypo. 

I appreciate that when you're newly diagnosed this is a huge amount of information to take in, and I'm not suggesting that a newly diagnosed person gets handed a huge folder with all of this (!) but I do think people should be made aware that education is available, and encouraged to ask questions and find out more.  And I think education is just as important when you've been diagnosed for 10 years, 20 years, 50 years.  Information changes, medication changes, better ways become apparent, and newer technology makes life more manageable. 

One of the reasons that I feels so strongly about it is that I was that uneducated person for a long time. I was diagnosed in 1988.  I was put onto Mixtard, taught to carb count, how to test my blood sugar and inject, and that for exercise I should have some glucose tabs before it.  And for almost 20 years, that was it.  The information was never updated, no-one ever told me about things like MDI or how things like hormones might affect my BGs.  Instead, I went on doing the same things, even when those things were clearly no longer working, because I wasn't aware there might be other ways of doing things - I'd assumed (silly me!) that if there were new things that I should know, that my doctors would tell me.  I went to clinic, got told off for HbA1cs that were too high, and sent away again.  Rinse and repeat for long enough and you hit burnout and stop caring (or at least I did anyway).

Fast forward to 2006, I moved to Cambridge, learned about MDI, and found the DOC.  The DOC was a revelation for me, in many ways, but especially for opening my eyes to new information and better ways of doing things.  The idea that I could adjust my insulin, ways of dealing with exercise, insulin pumps, and so much more!  This was all new to me, and it sparked a fire to become so much more proactive about my diabetes management, with obvious results in my blood glucose levels and HbA1cs.  It taught me to question my doctors, to research for myself, and to learn enough about my diabetes that I could manage it (mostly!) successfully by myself.  I try and help, and pay some of that back, by sharing that knowledge wherever I can, but it never feels like enough.

I see people on twitter and facebook, in forums and mailing lists, and in RL as well, who have such little knowledge about their diabetes that I find it terrifying.  I don't blame them - I was much the same in some ways - but when you find someone who's on a pump who has never been told about ketones, or someone who has never been told the importance of matching carbs and insulin, or even that you have to worry about more than just how much sugar is in something, it's scary. I worry for them, and I despair at the thought that there are HCPs out there who think that it's perfectly acceptable to let someone go with such a potentially dangerous thing as insulin with no education - or who blame the diabetic for out of range results without helping to understand ways of improving things.  There's no excuse for that in my book, and it's one of the reasons that I think the DOC is so fantastic - because it helps to provide that education, even when the professionals who should be doing it are failing so miserably.

Diabetes Blog Week Day 7: Spread the Love

As another Diabetes Blog Week draws to a close, let’s reflect on some of the great bloggers we’ve found this week. Give some love to three blog posts you’ve read and loved during Diabetes Blog Week, and tell us why they’re worth reading. Or share three blogs you’ve found this week that are new to you. (Thanks to Pearlsa of A Girl's Reflections for inspiring this topic.)


You know, this plan I had to read all the Blog Week posts in time to do this topic would work so much better if I didn't have to do this pesky job thing. Or end up with the lurgee mid way through the week.  However, both of those things have conspired against me, so I'm going to pick three posts I enjoyed reading this week, but there are so many more I haven't had time to read yet that I feel I'm missing a lot of excellent blogs out.

That being said, of the ones I've read so far the following three  (and so hard to narrow it down to three!) are all bloggers new to me and have been my favourites:

I love reading about people who have great doctors, and I really love the description of how trying to balance life and diabetes doesn't always fall in favour of diabetes, and that her consultant understands that. :)


Targoglycemia by Ninjabetic   

I loved this, it really made me smile,  Swap Target for "major supermarket chain of your choice" and this is me!  I've had some of my worst hypos in supermarkets - there must be something going on!

Share and Don't Share by 1type1

I love reading about people who have great doctors, and I really love the description of how trying to balance life and diabetes doesn't always fall in favour of diabetes, and that her consultant understands that. :) 

 The Next Day by diaturgy

I found this post fascinating, because it both stuck a chord with me, and didn't.  I've grown up with diabetes, and it's always been part of who I am and I'm fine with that.  I find it really interesting to read about people who feel differently, to understand their point of view.  I also loved the emphasis on non-physical achievements, ones that just get a little bit better every day without a defined end point. :)

I'd also like to thank Karen over at bittersweetdiabetes, for continuing to organise this week, coming up with some amazing and thought-provoking topics, and bring the DOC closer together.  If you have time, go take a look at some of the awesome posts from this week (a link to the topics and post lists is here)

Diabetes Blog Week Day 6: Diabetes Art

This year Diabetes Art moves up from the Wildcard choices as we all channel our creativity with art in the broadest sense. Do some “traditional” art like drawing, painting, collage or any other craft you enjoy. Or look to the literary arts and perhaps write a d-poem or share and discuss a favorite quote. Groove to some musical arts by sharing a song that inspires you diabetes-wise, reworking some song lyrics with a d-twist, or even writing your own song. Don’t forget dramatic arts too, perhaps you can create a diabetes reality show or play. These are just a starting point today – there are no right or wrong ways to get creative!


I've generally steered away from this as a wild card before, but this year I actually had an idea about what to do! Now, I'm not particularly creative, so my contribution to today's topic is going to be some songs that I associate with diabetes.

First up is Think Like a Pancreas:

I was fortunate enough to be able to go to FFL in Glasgow this year, and I had a fantastic time.  As part of the opening night Ollie Double, a parent to two children with diabetes, performed "Think Like a Pancreas" to the tune of "Walk Like an Egyptian", and it made me laugh so much. :)

Secondly, it's Turbulence by Bowling For Soup (or a bowl of soup as my mum calls them...)

I love this song, and it's got me through quite a lot, but it particularly rings true to me about diabetes.  It's the song that gets me through when I'm having one of those days (or weeks...) when diabetes is just not playing ball. That, and it's a beautiful song.

Finally, I had to include Pancreas by Weird Al Yankovic.

It just makes me smile, and I think our poor little pancreases could do with a bit of love ;) Also, it was my ringtone on my husband's phone for quite a while when we first started seeing each other. <3 br="">

Diabetes Blog Week Day 3: Memories

Today we’re going to share our most memorable diabetes day. You can take this anywhere.... your or your loved one's diagnosis, a bad low, a bad high, a big success, any day that you’d like to share. (Thanks to Jasmine of Silver-Lined for this topic suggestion.)

This was actually a far harder post than I thought it would be to write. When I first started to think about writing this post, all the memories that immediately sprang to mind were all negative.   The strongest memories I have related to diabetes are things like dreading going to clinic when I was a child, because I always expected to get yelled at.  The times I've passed out and woken up to paramedics. The time I ended up in hospital with DKA because of a GP that didn't know the difference between type 1 and type 2.

But I didn't want to write about any of those things, because living with diabetes is crap enough without constantly having a negative mental association with it. So I had a think, and I've come up with a more positive set of memories I wanted to write about, mainly because for me it represents a huge milestone in my attitude toward my diabetes care. 

When I moved down to Cambridge six and a half years ago, I wasn't in a particular great place in terms of my diabetes. I was on two injections of Mixtard a day, my HbA1c was in double figures, and I was going through a fairly extended burnout. Things changed a little bit when I started attending Addenbrooke's - I was put on MDI and taught the basics of ratios, so I was on a much better regime but I was still very much in burnout.  I had an annual review, where my endo looked at me and "you're smarter than this, you can get better results." It was the first time in about ten years that anyone had said that to me about my diabetes, and actually offered to help me do it.  Things didn't immediately get better, but it planted a seed, and a few weeks later I was floating about on the interwebs (as you do), when I googled something (can't even remember what it was now), and I ended up on the diabetesdaily forum.

It was eye-opening.

Here were a whole bunch of people, all with diabetes, with similar diabetes issues and regimes and thoughts to me, and they were talking about it and discussing ways to help. Up to this point, I knew one other person with diabetes, a fellow type 1 who was also and seemed to get on great with it.  I'd never met anyone - online or off - who seemed to be going through the same issues as I was.  I can't even explain it, it was like someone lit a fire in my brain.  I started reading everything I could, and that whole feeling of belonging, of having finally found people who understood what it was like to live with diabetes, never went away (it never has, even to this day). I introduced myself, I asked for advice, and the support I received was amazing. I started testing again, and instead of getting angry at the high numbers and giving up, I started trying to figure out why I was getting those numbers, and making changes. I picked up some books, I set about educating myself in all the new things about diabetes management that had passed me by. I started seeing changes, and feeling better, and that just motivated me to work harder.

The HbA1c I had at the annual review was 9.4.  Four months later, with the new knowledge and work I'd put in it was 7.5. Six months after that it was 6.9. I've done DAFNE, I'm now on a pump, and my HbA1c has been 7 or less for the past three and a half years, and I'm really proud of that. I never thought that was even possible when I was still in Glasgow.  And it's all because of stumbling onto that site, and finding the DOC.  A very important and positive memory in my diabetes history. :)

Diabetes Blog Week 2013: Share and Don't Share

*blows dust off blog* I know I haven't updated this poor neglected blog in a while, but this week is 4th annual Dblog week, and I had such fun doing it last year I thought it would be a good way to get back into the swing of things. :)


Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?  (Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.)

 I generally have a pretty good medical team - the DSN's are fantastic, and when I actually get to see my endo he's awesome.  However, I've had some issues with other doctors, and there's a couple of things I'd like them to see. Firstly, that diabetes is not just about numbers - there's a person, who's trying to live a normal life, and deal with all sorts of other issues, and juggle a chronic condition on top of it. Secondly, that diabetes doesn't always play by the rules. I might not fit into your little tick boxes and textbook definitions - that doesn't mean I'm doing things wrong or that I'm a "bad" diabetic.

When you look at my logs and you pounce on out of range numbers and demand an explanation, it makes me feel like I've failed, that somehow by not keeping all of my numbers in range, I must be doing something wrong. It's like being a child hauled in front of the head teacher. Instead, I would like some support, and encouragement.  An acknowledgement of the work and effort I put in to get these results.  Diabetes management isn't perfect. Life isn't perfect.  I would like you to see that, to ask how things are in general, if anything in my life has changed, if I'm having any issues with my diabetes management that I'd like to discuss.  There are so many things that affect my numbers, and insulin and food are only two of those.  When you focus on my logs and those numbers and don't see anything else, you miss all those other factors, and you can't help me.  You can't help me figure out that the reason I sometimes have highs on a Friday evening is because I get stressed out sometimes at lab meeting. You can 't help me decipher those patterns if you're not willing to look beyond the numbers to the person behind them.

In terms of things I don't want them to see? Well... there are many! The times when I wake up in the middle of the night and I'm low, and I don't even bother testing, I just grab some fruit pastilles from the jar beside my bed and go back to sleep (I don't do this all the time)... the times where I get so overwhelmed with carb counting something new or complex that I just take an instinctive stab in the dark...the weird things I do like add 35% extra insulin when I have a large amount of carbs (hey, it works for me).  So many things! Though I guess, if there was some forgiveness of out of range numbers and acknowledgement of life influences, I may feel less guilty about some of those things.

Diabetes Blog Week 2012: Diabetes Hero

Sunday 05/20 Let’s end our week on a high note and blog about our “Diabetes Hero”.  It can be anyone you’d like to recognize or admire, someone you know personally or not, someone with diabetes or maybe a Type 3.  It might be a fabulous endo or CDE.  It could be a d-celebrity or role-model.  It could be another DOC member.  It’s up to you – who is your Diabetes Hero??

I posted last year about my admiration for parents of diabetic children, and my mum (and parents like her) will always be one of my diabetic heroes.

Today, however, I want to talk about another of my diabetic heroes - my lovely husband Stuart. I think it's easy to forget that diabetes affects more than just the people with it - it affects those around them as well.  In my case, as well as living with me and my diabetes, Stuart has done it while dealing with a fairly severe needle phobia.  When we first started dating, I was still on MDI, and we quickly figured out a system where I could warn him that I was about to do my injection (usually by unsubtly saying "hide!"), and he could look away. 

He was there while I went through the process of getting started on my pump.  He supported me every step of the way, even though the very idea of it freaked the hell out of him, because he knew that it was the best thing for me, and by extension, for us. 

 I've said before about how I am quite territorial about my diabetes management, and he lets me get on with my diabetes management on my own, and he doesn't tell me how to do things or judge what I'm doing.  He would never dream of telling me that I shouldn't have a piece of cake because of my diabetes.  He's listened to me rant and moan when I'm having a rough day diabetes wise, or when I've done something stupid like pull out a site.

And he has quite literally picked me up when I've fallen down.  I've only ever had two seizures in 23 years of being diabetic, and they happened about six months apart, both after Stuart and I were living together.  The first happened in a supermarket, and Stuart came to pick me up in A&E, and sat until the wee hours when I was discharged.  The second happened at home, when I went down in the kitchen (pulling a table down with me...) with Stuart in the next room. He called an ambulance, and stayed with me the entire time.  While there is nothing quite as horrible as waking up and realising that you've had a seizure, waking up with him next to me very calmly explaining what had happened and that things were going to be ok? That takes a lot of the scariness out of that scenario.  He waited in A&E with me again, and both times he took the next day off work to look after me.

He has taken me, diabetes and all, to be his wife, and there was even a line in both of our vows about how he picks me up when I fall down.  He is, and always will be, my big gorram hero. <3

Diabetes Blog Week 2012: Saturday Snapshots

Saturday 05/19 Back for the third year, let’s show everyone what life with diabetes looks like!  With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures.  Post as many or as few as you’d like.  Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.

I spent quite a while considering what to do for this post, since I didn't really feel I had a huge amount of photos to add this year.  I thought about using one of the wildcards, but then I decided to do something different.

Five weeks ago, I got married.  I'd decided beforehand that I was going to do  my best to make diabetes as small a part of my day as possible, and I pretty much succeeded.  My bridesmaid's had hypo treatment in their bags, my chief bridesmaid had my meter and related stuff, and I managed to keep my levels fairly stable throughout the day.

I use an insulin pump to manage my diabetes, and about a month before the wedding I got in touch with Animas and asked if they could send me a couple of sets with longer tubing, just so I had options on the day.  They sent me eight, four of each of the sets I use. I was very impressed!   worked with my dress maker to sort out where I was going to store the pump during the day, and he made me a pocket so that I could hide the pump, but still get access to it when I needed it.


So, to make this picture diabetes related: can you spot my pump? ;)

I said that I managed to keep my levels mostly stable throughout the day, and that's true.  I only had two stumbling blocks during the day; the 27.5 I hit before dinner (damn adrenaline - who'd have thought walking down the aisle would be so scary!), which came down nicely with a correction, and I dropped low in the evening during the dancing, at which point I used the very handy pick and mix we had set up for our guests to treat the hypo... ;)

Diabetes Blog Week 2012: What they should know

Friday 05/18 Today let’s borrow a topic from a #dsma chat held last September.  The tweet asked “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”.  Let’s do a little advocating and post what we wish people knew about diabetes.  Have more than one thing you wish people knew?  Go ahead and tell us everything.

If I was to list everything that I wish other people knew about diabetes, I'd be here all night (and possibly the rest of the weekend too...)  So I'm going to focus on one thing.  One thing that I want people who don't have diabetes to understand about living with diabetes.

It's not easy.

That's it.  One thing.  Living with diabetes and trying to manage it on a daily basis is not easy.  It's such a simple thing, but one that I think a lot of people just don't get.  I think we are very good in the DOC (and by extension diabetics everywhere) at making it look easy.  We just get on with it, because what else are we going to do? Additionally, a lot of the things that we do are invisible - people notice the finger pricking and the injections if they pay attention, and maybe treating a hypo, but the calculations that go through your head when you sit down to eat, or when you try to decide what to do about a walk into town, or how much you need to eat to treat that low, if your set needs changing, or if you need to order supplies, or why the hell are you high/low and a million other little things that we do on a daily basis just to try to keep ourselves ticking over?

Those things aren't really noticeable. I will never forget one of my co-workers saying to me one day that being diabetic was easy, because it just involved testing your blood sugar and taking a couple of injections every day.  That was seriously all that he thought it was about.  (I may have ranted at him for about ten minutes about how wrong he was.  He doesn't believe that anymore... ;) )  But it stuck with me how unaware people are of what we do as diabetics, and thinking about it, if you're not diabetic or looking after someone who is, then you don't really have any reason to know. 

I'm not complaining, because I don't really want pity or sympathy - this is part of my life and complaining about it isn't really going to help (though I reserve my right to rant at the diabetes fairy from time to time!), but I really wish sometimes that people would realise that just because I'm not complaining, and I seem to be doing ok with managing my diabetes and you don't see me doing something as obvious as falling over, it doesn't for one moment mean that it's easy.

Diabetes Blog Week 2012: Fantasy Diabetes Device

Thursday 05/17 Today let’s tackle an idea inspired by Bennet of Your Diabetes May Vary.  Tell us what your Fantasy Diabetes Device would be?  Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, etc etc etc.  The sky is the limit – what would you love to see?
So there are many cool things going on in the world of diabetes right now - the artificial pancreas, the search for faster insulins, more accurate CGMs etc

So I'm not going to talk about them, but if I could wave a magic wand and have any diabetes device I wanted? I would have a magic carb counter.  Something that I could point at a meal, a piece of cake, a bowl of fruit, anything that I a about to eat and press a button and "bing!" it would tell me exactly how many carbs are in it. That would be awesome.  It would take so much of the guesswork out of managing my diabetes, especially when eating out, or away from home.  Hell, even at home when i just want to have a handful or grapes or some ice cream or something without actually weighing it or measuring it.

Not to mention those times where you're out and you order food and when it arrives it's one of those things that are really difficult to count (and don't get me started on sauces or soups - it's so hard to guess what people have put in them!) Or like when I used to go to formal halls when I was doing my PhD (basically fancy three course meals held at different colleges) and I'd be served something and have no idea what it even *was* never mind how to count it...

It's not a huge thing, and I doubt we'll ever get anything that will be that amazing, but it's one thing that I dream of. I'd love to be able to just eat food and take one of the variables out of it. That would be awesome. :)

Diabetes Blog Week 2012: One thing to improve

Wednesday 05/16 Yesterday we gave ourselves and our loved ones a big pat on the back for one thing we are great at.  Today let’s look at the flip-side.  We probably all have one thing we could try to do better.  Why not make today the day we start working on it.  No judgments, no scolding, just sharing one small thing we can improve so the DOC can cheer us on!

So I could probably write a list as long as my arm about things I could do better - I'm not perfect, and while I muddle along fairly happily with my diabetes management, there are lots of things that I could do just that little bit better.  


If I were to pick just one thing though, I think it would be basal tests.  I hate basal testing, as I'm sure everyone does, but it's not so much all basal testing as those in the afternoon/evening - the ones that cover lunch and dinner times.  I'm pretty good with the overnight ones, and the morning ones I'm generally fine with - it's just a case of waking up and not eating breakfast.  But there's something about the other ares of the day that I just find...difficult.

I'm not sure what it is - I think part of it is that it's generally when I'm up and about, and I'm hungry.  Lunch ones are harder because I'm at work, and I generally need something to keep me going, not from an 'I need carbs' perspective, but purely from needing fuel to get me through the working day.  Added to that, there's the whole thing about people asking why you're not eating lunch, and then the well-meaning sympathy that you get because you have to fast for a few hours.  The evening ones tend to be a bit the same - I'm aways hungry in the evenings, and it's hard to make dinner for Stu and then not have anything myself.

I do keep and eye on things in other way - I can usually tell if things are needing tweaking by looking at my levels around meal times, and I have a few ways of figuring out if I need to alter my basal or my bolus (and I love temp basals), but I know that I could always do better by doing a couple more actual fasting tests!

Diabetes Blog Week 2012: One Great Thing

Tuesday 5/17 Living with diabetes (or caring for someone who lives with it) sure does take a lot of work, and it’s easy to be hard on ourselves if we aren’t “perfect”.  But today it’s time to give ourselves some much deserved credit.  Tell us about just one diabetes thing you (or your loved one) does spectacularly!  Fasting blood sugar checks, oral meds sorted and ready, something always on hand to treat a low, or anything that you do for diabetes.  Nothing is too big or too small to celebrate doing well! 

Alright, one thing I do well.  Hmmm...

One thing I am good at is keeping my pencil case organised and fully stocked:

This is my little diabetes on-the-go stash.  I posted about it in my picture post from last years blog week (though I've got a new pencil case since then!), and it's probably one of the most sensible things I do with regards to my diabetes.  In this little case, I have my meter, strips, finger pricker, ketone meter and strips, hypo treatment, a spare pen, insulin, a battery, a spare infusion set and a syringe.  It's quite amazing how much you can fit in one little case, and I love that pretty much everything I need to keep me going for a little while diabetes-wise is in there.  I started using it for work, and then realised that I can just stick it in a bag whenever I head out somewhere.  As I've found that this really helps with being spontaneous while being diabetic (no need to try and find everything if someone suggests heading out for a while), I've really made an effort to make sure that it's always keep up to date, and that I refill it whenever anything runs out.  It's just a little thing, but it's one thing I do well, and something that I find makes living with diabetes just that little bit easier. :)

Diabetes Blog Week 2012: Finding a Friend

Monday 4/14 It seems the most popular thing about Diabetes Blog Week is that it helps us find blogs we weren’t reading yet and connect with some new blog friends.  With that in mind, let’s kick off Diabetes Blog Week by making some new connections.  Think about the d-blogs you read that you think we may not know about and introduce us to one that you love!!  Let’s all find a new friend today! 

There are several blogs I follow regularly, and you can see them on my reading list at the side here ->
I'm looking forward to seeing what other people post today and hope to pick up a few more blogs to add.  It was difficult to pick a couple of blogs to highlight from my own list, but here goes!

Shootuporputup  This was one of the first diabetes blogs I came across when I first started poking around the DOC.  I immediately loved the attitude that Tim and Alison showed towards diabetes, and the blog is informative and funny and, when I first started reading it, one of the rarer UK-based blogs.  I love the slightly irreverent view of diabetes while still acknowledging it as a serious thing.  I'm very much a believer in using humour and fun to help you through things, and this site is a great example of that.  One day I will make it to a shootup meetup - despite coming from Glasgow and visiting fairly often, I have yet to time it so that I'm up when there's a meetup in Edinburgh!

Everydayupsanddowns  I came across Mike's blog after reading some of his posts on the diabetessupport boards.  I found his blog to be just as thoughtful and interesting as his forum posts, and I continue to enjoy his posts.  He posts wonderfully though out posts about his diabetes experiences, and I've particularly enjoyed reading his transition from MDI to pump.  As someone who had no doubts of reservations about pumping, it has been really enlightening to read what it's like from the point of view of someone who was came at it in a more cautious way.


Sixuntilme  I'm sure pretty much everyone already reads Kerri's blog, but it's one that has always struck a chord with me.  I love the way Kerri blogs about life with diabetes, and again, it was one of the first I came across and had the whole 'omg it's not just me!!' revelation.  One of the things that had particular struck me about this blog is that Kerri's a little bit ahead of me in dealing with the big things in life, like marriage and kids, and it's been especially inspiring to read about these things  from someone who's actually going through it.  I actually took printouts from the post about pumps and wedding dresses to my wedding dress person to show him what I wanted him to do with my pump, and it worked fantastically, and so when I think about what's going to happen in the future when we start thinking about kids, it's blogs like this that actually make me believe I can do it. :)

Diabetes blog week 2011: What we've learned

What we’ve learned - Sunday 5/15: Last year, Wendy of Candy Hearts made a suggestion for this year. She commented “I think Day 7 should be a post about stuff we've learned from other blogs or the experience of coming together online...” Today, let’s do just that!! What have you learned from other blogs - either this week or since finding the D-OC? What has your experience of blogging the DBlog Week topics with other participants been like? What has finding the D-OC done for you? If you'd like, you can even look ahead and tell us what you think the future holds!

I think this might be my favourite topic this week. I owe so much to the DOC.

When I moved to Cambridge about five years ago, I was on two injections of mixtard a day, my HbA1c was in double figures, I barely tested and had stopped carb counting.  I wasn't because I didn't know how to do these things, or didn't realise their importance, it was just that it seemed that nothing I did made a difference.  I'd test, the number would be high, and there was nothing I could do - I had no fast acting insulin, or knowledge of how to correct even if I did.  I didn't know how to adjust my insulin, and it didn't seem to matter what I ate or did, my numbers were always Bad, and so I just stopped bothering.

The first thing the clinic at Cambridge did was switch me to MDI, which helped, but I was still suffering from what I now realise was a fairly extended burnout.  My HbA1c came down down a little, into single figures but only just, but I still felt like there was nothing I could really do, that I was powerless in the management of my diabetes.

And then, one day, I can't even remember how, I came across the DOC.  I've alwasy been fairly active online, parts of various forums and mailing lists (huge geek here ;)), but I'd never thoguht to look for anything diabetes related. I came across a couple of websites (diabetes daily was the first, I think) and it was amazing.  Here were all these people with diabetes, getting on with things, helping each other, talking about problems they were having and, most importantly, people who got it, who understood what it was like to live with diabetes.  It was a revelation.

I joined a couple of these forums, and began reading.  It was inspiring, especially knowing that there were people who had similar problems to me, but who had improved their diabetes control.  who still made mistakes, and tried things that didn't work, and had the random highs and lows, and didn't beat themselves up about it.  It gave me the motivation I needed.  I picked up a couple of books that were recommended for MDI, I learned about pumps and how to deal with whatever diabetes tried to throw at me.  I asked questions, and I took every opportunity to learn that I could, and put the new information I had to use.

And it worked.  My HbA1c came down from 9.1 to 7.5 in three months.  I felt so much better, and I realised that it was possible to live with diabetes and not have it control me.  It was so empowering.

Now I have a pump, and my HbA1c had been around 7% for the last three years.  All thanks to the wonderful DOC. :)